It’s Okay to Want a Diagnosis!

Many of those who think they might be autistic don’t feel the need to gain a formal diagnosis – some might be in denial, many are confident in self-diagnosis, and others just don’t care for labels. That’s fine. For them.

The Need to Know
For the rest of us, however, the Need To Know becomes a driving force, eating away at our self-confidence, our self-worth, and often our mental health too: the answer to The Question forever waits just round the corner, frustratingly out of reach: do I have Asperger’s? Many of us suffer years of having the doubt lurk in our heads like a bad dream – maybe I am, maybe I’m not – before plucking up the courage to visit our doctors.

Other people don’t get it
We find we daydream about how we’ll feel when we finally know, and then fall into despair at the prospect of the answer being “no” – a cycle that might repeat itself many times a day. It doesn’t help when those around us tell us we’re attention seeking, or just “obsessed with Asperger’s” (as though no one with a lump obsesses about cancer… der), or – for those who have already suffered a litany of misdiagnoses (depression, bipolar, psychosis, etc.) – we’re gently asked if we’ve considered the possibility we might have Münchausen’s syndrome. Yep, thanks for that.

You know yourself better than anyone else. Have faith in your own convictions.

But it’s all so confusing…
So as we tie ourselves in knots trying to work out what to do for the best, still the voice keeps talking: “If I admit to wanting a diagnosis, that will make me act more autistic to convince the doctor. I could research more about it, but then I won’t know if I’m being me, or just the autistic people I’ve read about, and someone’s bound to notice, and I’ll be called out as a fake. Maybe I am a fake. Maybe I am just attention seeking. Maybe I am just a failure.”

And so it goes on.

What if I’m not autistic?
But the truth is, if you can strongly relate to the experiences of autistic people, and have similar stories of your own to tell, then you are very likely autistic too, and you should have confidence in that comparison. Just like if you have a sore throat and a runny nose, you know you’re not making up your symptoms just so you can say you have a cold. You can’t fake them (any more than you can make your nose run), and you can’t hide them (ever tried to hide a runny nose?!). To a diagnosing psychologist, your autism will be obvious too.

It’s OKAY to do the Research!
Reading up on Asperger’s is not going to make you autistic if you aren’t already. Instead, it will offer some extremely important self-awareness that will help you, whether or not you go on to seek a diagnosis. I didn’t do any reading (I saw it as cheating), but I wish I had – because I went to my doctor without any real knowledge, or evidence for my suspicions, and with nothing to counteract his prejudice that grown women can’t have autism (yes, seriously). Then, when he said “don’t you think you might be just a little bit depressed?” I was crushed, because I knew he’d made up his mind: another neurotic middle-aged woman. It took another eighteen months for me to pluck up the courage to try again.

So Where do I Start?
If you are in the UK, you have two routes to diagnosis: NHS and private. The NHS route is free, of course, but the waiting list can be up to a year long, depending on your area. The private route is expensive (£500+) but you might well be seen within weeks, or even days. And don’t even begin to think a diagnosis won’t count if you pay for it. It will.

If you opt for the NHS, the first step (in the UK) is to visit your GP. If you have a choice, I recommend you ask to see a younger doctor – as they are more up to speed with adult autism in my experience. Take with you a) a written list of your symptoms, and b) a supportive friend or family member (who also believes in your autism). Be prepared, also, to explain why you want a diagnosis; we have heard of numerous cases of people being told that, as there is no support for adults, there is no benefit to being diagnosed. In my humble opinion, this is not for a doctor to decide. So, explain to him/her what the benefits will be for you. You cannot insist on a referral, but if s/he agrees to refer you, you can chose to be referred to an autism specialist. If s/he refuses to refer you, don’t give up – go home, do some more research, rewrite your notes, and get a second opinion. (See the “Your Right to Chose” page page on the NHS Choices website.)

If you opt for a private diagnosis, the National Autistic Society website is a good place to start.

Assessment Day
Finally, however long you’ve had to wait, Assessment Day arrives. You wake, and you worry: about how you should present yourself, whether or not you should try to make eye-contact, whether you will appear autistic enough… Try to stop worrying. I won’t say ‘just be yourself’, because I know many of us have lost sight of who we really are by this point, so just relax and let yourself be whoever you happen to be on the day. The psychologist will be prepared for you to be stressed, nervous, anxious, terrified to the point of stupor, mute… whatever. They’ve seen it all before. For what it’s worth, I sat through a 2-hour interview for my assessment, but my psychologist later told me she’d worked out I was autistic within three minutes of my arrival. They can tell, so – really – try not to worry.

The assessment itself
The assessment itself may vary, depending on who you see, but it’s likely to involve an interview of some kind, probably quite a long one (mine was two hours) – it’s okay to ask for a break if you need it. You will probably be asked a series of questions about your childhood, your friendships/relationships, any awareness you have of sensory issues (aversion or attraction to particular noises, lights, tastes, textures, etc.), your hobbies (including whether or not you are obsessive about them), your routines, your work, and so on – anything that is likely to reveal symptoms. So start thinking now, and making notes about memories that seemed odd at the time, or times when you felt you didn’t fit in, or ways in which other people think you’re ‘odd’ or any autistic traits you can relate to (e.g. I didn’t own a vacuum cleaner for years – I couldn’t stand the noise – and would sweep all my carpets with a stiff brush and a dustpan).

This kind of preparation is not cheating. It will help the psychologist.

The Diagnosis
Finally, after perhaps years of wondering, the conclusion is delivered…

to be continued… “After the Diagnosis” coming soon.

Related content:
» Think you might have Asperger’s syndrome?”
Asperger’s in Women
Bullying & Abuse
» Symptoms of Asperger’s syndrome (from an aspie perspective)
» The Triad of Impairments (in real terms)
» Diagnosis Stories
» Online Tests


37 thoughts on “It’s Okay to Want a Diagnosis!”

  1. This article is so helpful. All of these things are going through my head right now, the worry of not being diagnosed, wondering how to act while I’m there, fear of overacting or faking it, etc. I have my testing in about a week and all of these things are constantly in my mind. This was really reassuring and I’m glad I was able to find something that made me feel less alone.

  2. This whole post essentially mirrored my thoughts. I always wondered if I was just attention-seeking and I made up the whole diagnosis in my head. I had the same experience with depression. I thought I just made up the whole thing and did it well enough to convince myself as well as my friends, family, and doctors that I was depressed. I think I should see a doctor about this, but I’m too scared because I’ll have to go through my parents (I am a teenager, not an adult, but this website definitely helped me a lot). My parents don’t necessarily discriminate against autistic people, but they believe in the whole “vaccines cause autism” thing. They already yell at me enough for doing strange things like talking to myself or rocking back and forth. I talked to my school’s psychologist about this, and he said that the school cannot diagnose, but that I should consider telling a doctor. Do you think I should tell my parents and get a medical appointment? If so, how should I approach it with my parents?

  3. I have an autistic spouse, and we, after 2 years of marriage, are certain that I am also autistic. I doubt it, and I fear being told the answer is no, that’s it’s just in my imagination, even when I know that I’ve exhibited all the symptoms of it except the speech delay. I’m also terrified of even trying to ask, though I want a diagnosis and I’ve garnered somewhat crippling mental health issues from being forced to be something I’m not and spend most of my life utterly ashamed of my entire existence. The affects of this have already tried to been addressed separately, but only by themselves, not as the after-effect of something else.

  4. I’m 45, female, and have wondered for years whether I could have undiagnosed Asperger’s (though I understand that term for it has now been retired.) One day I may seek a formal diagnosis, for my own peace of mind if nothing else.

    But in the meantime, I came across something while looking into it that I feel has been somewhat helpful, so I’ll share it here in case others find it useful to know.

    There is something called the broad autistic phenotype (BAP.) What this means is that there are people, often related to people who have been diagnosed with autism, who do very clearly exhibit traits associated with autism, but to a subclinical degree (i.e., not strongly enough to warrant a diagnosis of autism.)

    This is a real, observable, scientifically documented thing. If you think you may be autistic but have been told you are not, it doesn’t necessarily mean you’re crazy or imagining things or attention-seeking or just a “failure as a normal person.” You may, rather, belong to the autistic phenotype–the traits you’ve noticed in yourself may be very real! Just not as pronounced as they are in people who meet the clinical requirements for a diagnosis of autism. You may have relatives who are autistic, whether or not you’re aware of it.

    If you keep asking mental health professionals whether you’re autistic and they keep saying no, try asking whether it’s possible you do belong to the BAP. There are evaluations for it, and it’s another possible answer to why we are the way we are.

  5. I felt like crying all the time I was reading this article… Because I just found out about what is autism and Asperger’s syndrome and I relate very much to most AS symptoms (as a grown woman).
    I feel both relieved to think that I may not be a weirdo loser after all (well just a weirdo lol), and as the same time devastated that I may be autistic (autism is badly advertised and researched in my country). But I’m also afraid I might be a fake who is inventing ways to justify herself…
    Exactly what is written here…

  6. I am fifty years old, female, and convinced that I have Asperger’s. Well, convinced when I’m relaxed, worried that I don’t have it when I’m worried.

    I went last week to a university clinic which caters to people who self pay. I can’t afford TEACCH, which has been great with a relative of mine who has been diagnosed with Asperger’s. So I went for the preliminary visit and the graduate-student psychologist was personable and nice with an encouraging air. I felt okay about everything even though it wasn’t an evaluative visit, just the initial questions so they could send me down the pike to the most appropriate person (I hope). Then at the end, she gave me a memory quiz and of course I recalled the three items she listed. She asked me a couple of other questions and after answering them, she asked me to list the three things again. I failed. So now I think she thinks I have dementia or ADD but not autism. I am obsessing about the whole topic and my husband who is the most wonderful person God hand-picked for me, is getting a little impatient. So glad I found this site because it describes myself and my worries. Many thanks!

  7. i always knew something was different , but i never knew what it was. Growing up and in to adulthood. I just choked it up to moody. Then the more in tune i became the more i realized it wasn’t right. I shouldn’t feel the way i do all the time. However, like i said i blamed my hormones / moods. Because i could fake it well enough to get by. I’ve never had many friends. I do not stay connected to people. I finally met a women ( been married 16 years now ) that stuck by. We would fight and have hard times and i would try to explain things but i never really got it myself and over the years somethings just started to get clearer ( diet cleaned up a fair bit ) in my mind and i started questioning why am i the way i am ? Maybe by an accident , but i ended up on Naboline ( a pain medication ) and it changed the way i thought about things , for the better. So at this point i knew there was something wrong with my brain and chemicals could fix it. This lasted a while , but the problem would still be there ( just a lot less frequent ) . Today i came across this article and the people posting . Something clicked i finaly realised what’s wrong. I now know i can get help and even just reading this has made things more clear. SOme questions actually trigged memories of how i was as a kid and different stages of life. I still dont fully understand , however i do know i’m not crazy !

  8. I can’t begin to tell you how thankful I am for this post. I’ve been so scared that I somehow *made* the doctor think I had AS. My family are completely convinced I have it, keep saying “But iz, we’ve known you your whole life”. I think partly it is my OCD (I also have OCD) causing me to doubt myself. Partly it’s because I am metting obstacles in getting to see the right doctors and meeting some really horrible ones along the way. I will be bookmarking this page, to come back to. Thank you again.

  9. This article really just hits home with me. I’m a 21 year old college student, and I have been really agonizing over the question of “do I have aspergers?” for several months now. The fear and anxiety have consumed me at times because the thought of being wrong terrifies me. If I’m wrong it just means I’m a socially awkward failed normal person. I’m still wrestling with what to do. I have only shared this with a couple of trusted friends, and I haven’t shared my research or thoughts with my parents because I’m afraid of what they will say or think of me. The thought of being labeled as a socially awkward hypochondriac by my own parents is horrifying. If anyone has advice I’d be very grateful.

  10. Hi
    I found your website whilst attempting to find myself. You all gave me the courage to see my GP about a formal diagnosis. Something I had been contemplating for a very long time. I had self diagnosed for almost 15 years. I had to wait nearly 12 months for an appointment but last week I was finally told I had aspergers syndrome. I always knew I was different but couldn’t quite figure out why. At 47 years old it’s a long time to wait but I guess I got there in the end. It took the psychiatrist one hour to explain what I had wondered about for what has seemed a life time. Don’t ever give up being who you truly are. x

  11. Hi, I’m glad I have found this site. The CAPTCHA question in order to post a comment caught me out, as I am discalculic! I Cannot afford the £££ for an assessment to prove it to future employers.
    I have suffered with issues since childhood regarding supposedly strange interests, not joining in with “normal” play and social interaction and not being able to understand sarcasm, “tribal” behaviour, passive-aggressive and confrontations. I was made fun of and bullied by other children and my mother and various step-parents. As I grew up I managed to learn by observing others’ behaviour and social interaction to be able to “fit in” and it was exhausting. It still is. I am now 41 and since having my son 7 years ago, I am struggling to connect with other parents and neighbours and as a result have offended people by preferring to keep to myself. I cannot do chit-chat and navigate their complicated politics and allegiances which marks me out as aloof/rude. I am not.
    Over the years I have been sent for counselling/therapy, been put on many different medications including SSRIs and tricyclics. In the last five years I started putting the pieces of a jigsaw together after speaking to a chap (fellow diesel loco enthusiast, lol) who has Aspergers and his experiences were startlingly similar to mine. I came to realise that my depression and social angsiety are linked to Aspergers and I would like to see about a diagnosis. The fear of not being taken seriously by my GP is worrying me a great deal. I’ve discussed this with my husband and he agrees that I should go. He gets frustrated and angry sometimes when I can’t read his expressions at times and my guesses make it worse. I regularly upset his parents and sisters without realising that I’ve said anything wrong at all. With very few people who accept me as I am, I feel very alone. I would like people to understand that I don’t choose to upset them by how I come across. Being “normal” is exhausting.

  12. Thank you so much for making this site. It’s made me feel all different emotions, but laughing in agreement was my favourite part! I have my assessment on 24th Feb, yet I have no support as all my family say they are 100% certain I don’t have it, and think I’m a hypercondriac, they also think my son who is close to diagnosis doesn’t either, and it’s all in my head.
    Your support has been the only.

  13. Great article! I was officially diagnosed last month. I went through all of the experiences you talk about… being self-conscious about whether I would appear “autistic” enough if I tried to be on my best social behavior during the interview, yet worried about being accused of “faking” it if I acted TOO autistic, having to explain to others why I even want a diagnosis in the first place and why I’m obsessed with Aspergers (I love your cancer metaphor, because my aunt had breast cancer around the same time and she was definitely obsessed with it too!) Even after I found out I definitely have Aspergers, other people in my life have been skeptical, asking annoying questions like, “So this was a REAL doctor you went to? What are her credentials?” and hinting that a doctor might give you any diagnosis you “want” in order to make money. Have you written the “After the Diagnosis” post yet? I’d love to read it!

    • I would like to hear about others’ experiences after diagnosis too. I was diagnosed after years of wondering about myself and said it was going to be purely for my benefit. I was never going to tell anyone especially my employer.
      I had confided in two people at work, one being SEN coordinator at my school who suggested I looked into Aspergers and the other being my line manager who has been very supportive. However, diagnosis has not come as a source of relief. I keep thinking about all the things I might have said or have said which were inappropriate. I think about attachments that I have with people and routines that run my day. Before I was purely absorbed in the idea of being assessed and very little else. I ruled my thoughts for such a long time. Now those thoughts are gone and replaced with others. The psychiatrist was of interest to me and she must have had so much knowledge of the subject. She basically said that I had suffered from anxiety for so long that it had become a normal part of my life and that my determination to be neurotypical and ‘fit in’ was exhausting me without me realizing it. She said it had ended my career as a teacher (that hit home hard). You see as a teaching assistant I can leave the classroom whenever I like and so when I’m feeling overwhelmed it’s easy to do so without suspicion. I am lucky I guess because I genuinely work in a fantastic school with amazing people who I know ‘love me’ as I am, but I’m still scared to tell them. I’m still confused! I’m 47 and still play with lego, climb trees, love gardening. At work I teach kids about everything like how to saw wood and build nesting boxes and I just love maths and my best mate is a guy but he doesn’t know it. I can’t have a best friend who is a man because then they are called husbands. This is what I’ve been told. But why? There are some things that you can only tell your friend. My friend is amazing at everything and he likes all the things I do. As you can see I’m no better off even with my diagnosis. So do I tell the world or not?

      • I’m also 47 seeing my GP in 3 hours to ask about assessment, and came to this site to prepare…but I wanted to respond to the statement that you can’t have a male best friend unless he’s your husband. I’ve almost always had a close male friend in my life – right now I’m lucky enough to have two. I fell in love with a ‘male best friend’ in 1998, and we were a couple for 4 years and before that a different ‘male best friend’ fell in love with me, and stopped being my friend when I rejected his advances. However, I’m not in love with either of the two close male friends I have now, nor are they in love with me. So, the point of all this rambling is to tell you that men and women can be best friends, and sex doesn’t have to get in the way, no matter what it says in the movies.
        As you can probably imagine, I’m stressed and excited about starting the process of getting a diagnosis. So your post was useful in reminding me that diagnosis won’t solve everything. I wish you all the best.

        • Thank you! I don’t feel the issue of male friends is so unusual now. Good luck with finding the answers you’re searching for.

  14. I went to the doctor today after doing my research and listing all the symptoms I identify with, which was a pretty hefty amount. After I told him some of them, he said he didn’t see Aspergers in me. Immediately I was very upset, feeling more confused than before. I don’t know if he’s right, I don’t feel like he is though. I had imagined myself getting a diagnosis and having so much more clarity and a stronger sense of identity, but now I’m really unsure… I don’t know if I should see someone else or just give it time. Or if I’m obsessing over nothing!!
    Oh, also, I’m 22.

  15. It is not true that the psychologist will see straight away that you have Aspergers. Several people who are familiar with autism whether through family members with a diagnosis or through working with people with Aspergers and autism have encouraged me to go for a diagnosis as they believed I had Aspergers. However, a short session with a psychologist and he said I have “strong autistic features” but I don’t have autism or Aspergers. The reasons he gave for his opinion were that I don’t speak in a monotone voice, I have a sense of humour, and I have a long term friend. He also suggested I continue to seek support and advice from the National Autistic Society. I am now more confused that I was before I went for assessment. My ASD 7 year old has a great sense of humour, doesn’t speak in a monotone voice and has one or two friends. However, if he is observed for a period of time (longer than my assessment time) it becomes clear he has ASD. How can a psychologist judge on a 45 minute interview if an adult female with high IQ has Asperger’s?

    • Deborah, I know this is a response to something you wrote 15 months ago, but for those that might be reading this site in the future, I am going to respond anyway. The answer is they can’t and if they think they can, find another provider to work with you. I live in the USA and have a Master’s degree from Duke University and am now a retired Naval Officer and Pediatric Nurse Practitioner. I am far from stupid and I have had providers blow off my input when working with my now adult son as though I don’t have a clue – after all I’m just a mom. I have read numerous books about autism and about giftedness and about dual diagnoses and wrong diagnoses (not to mention my years as a Nurse Practitioner) and I am the one that has lived with my 20 yr old son all his life and can tell you that whether he looks neuro-typical on the surface and for short periods of time in a controlled setting or not, he is NOT neuro-typical. We are learning so much about autism and so many of the past perceptions are wrong. The outward appearance/behavior is just a reflection of the internal wiring and perceptions of external things. All Aspies do not behave alike! (If you’ve met one person with High Functioning Autism, you’ve met one person with High Functioning Autism!) Read “The Autistic Brain” by Temple Grandin. She is an adult with autism and has been involved with a lot of research regarding autism. She is well published and does guest speaker lectures etc. This is just a start and the book has a lot of scientific stuff in it too, but once you get into the controversies about labels and diagnoses and etc it will show you just how misinformed even good providers/doctors are now days. Hang in there and find a provider that is keeping up with current knowledge about autism.

  16. I’m really nervous about going and getting an official diagnosis, because some days i’m sure i have Aspergers and other days; after i take one online test and it says i’m in the middle, i’m not. I really don’t know whether I want it or not, and I can’t relate to some of what other people say, and I don’t know if I have certain symptoms because what is hopefully my autism makes it so I don’t care about relationships. If I make a few, i’m fine. if I don’t, i’m also fine, so I don’t really bother to keep up my relationships at all. I can relate to a lot of things though and that makes me think I have it. (that and every single online test saying i have Aspergers or close to it)
    But I still don’t know because no one in my family believes me, and my mom told me I might have a little, probably just to get me to stop asking. Though I did show her this post, so she asked if I really wanted to get diagnosed, and I said yes but i’m considering telling her to wait…
    I’m not even really sure why i’m writing this because its a personal choice, but I guess I just need some support or encouragement or direction or something… :/

  17. The main reason I want a diagnosis is to be able to prove to people that the way I am, is not by choice. Literally structurally I am built and designed this way. This way they all find so repelling :/. Let me tell you, I’m one resilient m’effer thanks to all the brutal rejection! It’s a lot harder for me to get phased at this point. I am emotionally impenetrable. Unable to be mentally destroyed. I have more mental strength than all those “normal” people will ever have in their existence. Rest assured. No one will wreck me. Resilient is my middle name. That is why, I know, I will be far more successful than 9/10ths of people when my day comes.

    • There is a great t-shirt on the internet for sale that says “Yes, I have Aspergers. Go ahead and stare. In 15 years I’ll be your boss.”

  18. This helped a lot, and I really identify with most of the feeling. But I am only a teenager, and I’m afraid to tell my mother that I think I have Asperger’s. I’m just afraid she won’t believe me or take me seriously, because I think she would kind of be in denial about it. I just am getting frustrated about it and I want to say something but I’m having trouble building up the courage to do so. Any advice? At all? Please!

  19. Thank you for this. I identify with the part where you comment on the worry of falling “into despair at the prospect of the answer being “no” “. (I also note Deb’s post). Well not despair, but it is quite a big process to go through, especially asking your parents to accompany you (when you are nearly 50) and they don’t even know exactly how you are – “that you have obsessions” etc, as a result of putting on a kind of persona as you get older with your parents as well.

    One of the problems is if it is difficult to know yourself, especially in my case, as I identify with some features but not all features. I have found it frustrating when I haven’t been able to identify with typical features of autism, such as difficulty with unpredictability (though it has occurred to me that I have struggled in jobs without any systems or direction) or sensory sensitivity, because that then puts doubt on “The Question” as you call it, and my identification with other described features. I have thought of it as thinking “I may have found my “home”” and then finding I am mistaken, which is quite upsetting actually, and leaves me with the feeling that I don’t fit properly anywhere. It also makes me feel like a fraud, just as you say – I think that perhaps I am imagining it, because I fell for a guy with Asperger’s which is why I suddenly want to present myself as similar to him. Though, in that context, it only occurred to me through my conversations with him – monologues on my own experiences that I thought might be in some ways similar to his. I don’t know if they actually were because he never spoke, in depth at least, about his personal experiences. Anyway, from initially commenting that I was not the “typical neurotypical”, I came to think (after consulting female profiles… “hey up…maybe I’m less neurotypical than I thought!”. . . .

    I note that you use the word “strongly” identify. Maybe that is the key to diagnosis. Otherwise it might be better to muddle on with a self diagnosis of mild Asperger’s, or having some traits of Asperger’s, without seeking a formal diagnosis. It is frustrating though, and can be upsetting to be in that position.

    However, what I have found is that advice intended for those with Asperger’s, such as a book I read on surviving the workplace, is nevertheless useful. This book completely changed both how I thought about it and my actual experience, and I went from one dreadful job (it was a low-grade job for which I was over-qualified) and which I approached from the angle of just doing the work and not getting involved with conversation with colleagues, as they were conversations I wasn’t the slightest bit interested in, like their holidays and what is on tv, a job where I constantly felt I wasn’t liked much and others ignored me, to one (after reading the book) which was similar, and I was over qualified (though, at least I had my own office in the beginning which was helpful) where they all thought I was wonderful, said how well I had fitted in, and that they would miss me when I left – they even wrote me a thank you card afterwards (both jobs were temporary). It was a matter of getting my own mind set into a place where I was able to cope with the problems. Of course it might be difficult for someone with extreme Asperger’s to do that. I don’t know. I also need to read the book again before my next job (which is permanent – I am overqualified for this one as well) so that I can hopefully fit in, in a similar way to the last job.

  20. Thank you for writing this article. I have endured a great deal of apathy and skepticism in the psychiatric profession, not to mention from members of my own family. After a misdiagnosis of Schizoid Personality Disorder, I am once again going to see someone about an assessment for ASD. Only this time, armed with more information and a lot less naivete!

  21. I’d just like to say THANK YOU for making this website. When i started my web-journey tonight i thought i was just depressed or something but after taking the test and reading about your experiences and why “it’s okay to want a diagnosis” I feel like I should definitely consult my GP.

  22. Only recently when I found out what aspergers was did I suspect why I am like I am.
    That test confirmed it… but what is the purpose of getting diagnosed? there is no cure for aspergers, god knows I would give anything to be normal.
    People smirk at me when I talk like “oh its that weirdo again”
    Maybe the answer is to be doped up so I just don’t care.
    ah well, back to the grindstone.

    • The purpose is to gain understanding mostly. Whether someone diagnoses you particularly or not, if you suspect that many of the descriptions fit you, then research how persons that are similar to you improved their quality of life and used their unique traits as a blessing instead of a curse. Example – many Aspies are able to focus on details for very long time periods. This makes them ideal employees for jobs that need this ability. The majority of high income computer geeks are most probably Aspies! Find out what your sensory issues are and find ways to eliminate them so you can pull yourself out of “defense mode.” Example – if bright florescent lights aggravate you, get a desk near a window so you can use more natural sunlight, which will let you focus on what you are doing better, etc. Seek out others that are similar to you as they may understand your wonderful quirkiness. They will be your tribe and you won’t mind those that don’t “get it” so much anymore. It does matter. Make the decision today to move forward.

  23. Hello,

    Please do not give up on your quest for diagnosis. I managed to get mine done through the NHS. I was lucky in that the assessment centre I went to specialises in assessments for autism & aspergers. The psychologist who runs it is very good. Initially from general conversation in the interview she told me that it wasn’t really obvious that I might have aspergers. However, the practical Ados4 part of the assessment gave her the answers. I couldn’t bluff that one out. I got my result there & then verbally & a written report through the post some three days later.

    I had mixed feelings at the time, then sadness for years wasted of my life because of the way that I think & perceive the world. My wife took it harder than me as our marriage has been a troubled one over twenty five plus years. I also felt guilty over things that I’ve put her through in that time. However, you cannot turn back time! What diagnosis has done for me is to recognise when I’m approaching meltdown & walk away from certain situations or people. It also enabled me to fill in the missing pieces of the jigsaw of my life. I’ve also found that you can then make coping strategies to deal with situations.

    Don’t get me wrong it’s not a walk in the park & there are days when I’m mentally & physically worn out; which can make me touchy/ grumpy. A daily dose of Prozac also helps to keep things on an even keel from the anxiety point of view.

    Please don’t let your GP put you off or belittle your suspicions. Stand firm & if necessary be prepared to make a complaint if they won’t take you seriously. They don’t have to live with it like you & your partner do.

    Good luck with getting a diagnosis. I hope that it gives you the answers that you want & some peace of mind.

    • I have recently emerged from a month of speeding tickets, parties, other women, career loss, loss of friendship, loss of education, loss of self worth, and complete lack of will and motivation to continue. I reconciled the ties i had severed with my father a few moments ago. In my childhood I was labeled Bi-Polar and clinically depressed. These diagnosis only made me want to kill myself more than I already wanted to kill myself.
      Due to the previously mentioned current life events, I knew there was nobody left to call except my father [who kicked me out of his house a month ago] I called him and told him of a recent altercation leading to involvement with local law enforcement (who only called me rude, inappropriate, told me to go back to Canada, and pretended they were there to help, even though they did not)
      I told him I needed help. But not to be locked in a mental hospital like I have already been six times and 9 months in residential treatment. He talked me through his struggles with sleep and life and that seeking diagnosis is the next logical step.
      I have a room mate who is a nurse and I am pretty sure she has the same “hunch” about Aspergers that I have for myself.
      In the morning, I will tell her about my plans to seek diagnosis. I do not know where to go or who will help me. So many humans are against me at this time. And as a pre-veterinary technology student, I fear the things I have done to myself to get me to this point will sabotage the dreams I hold for myself. In appearances, I still get carded for cigarettes even though I can legally purchase alcohol in America (although I do not drink anymore). Humans who I contact, call me crazy, or a child, and both are TRUE but rarely ever pertain to the current situation. My thoughts and feelings change on a minute to minute basis, but overall I have always been this way, the same way, but I am just noticing now that I need a defense against those hurtful things they say to me. I am 112 lbs today. A member of the U.S military assaulted me at 4:34pm on Friday, March 14th 2014. He is my neighbor. He verbally abused me, threatened me, then pushed me to my knees. I called the police. They will not help. They say I am inappropriate and out of line for the way I talk about the American military and the American Justice system.
      I do not care anymore. I do not want their help. I do not want to associate with my neighbor.
      I want a diagnosis.

      • For those of you reading this long after the original post – many states now have special law enforcement teams that are trained for working with autism. There are sites on the internet to find training videos and for police, lawyers and judges etc to read up on understanding how being autistic affects behavior, testimonies, appropriate sentencing etc. Do your homework and by all means TELL any police officer, fire fighter etc that you have autism so they do not misinterpret behavior etc. Your defense lawyer needs to be educated too!

  24. Your current posts reflect exactly what I’m feeling at the moment. Thank you thank you! I’m a middle-aged woman who might need formal diagnosis to help with recent work problems.- new open plan office after 20 years of solitude!… Do you have figures for how many folk go to see a specialist and leave without a diagnosis of ASD?

  25. Hi,
    My husband went for assessment with an NHS psychologist for Asperger’s in 2012; it took twelve hours, over about 7 weeks of one or two hour visits to present him with a printed life history and no firm diagnosis. His background is complicated, his childhood was difficult, this was the reason given for a vague ‘the diagnosis is inconclusive’ with an admission that he does ‘have traits’. After the result, we both felt exhausted, depressed and set-back. For weeks before hand I had done loads of research and we were working together on the traits he seems to exhibit, to manage our communication and interactions. The one good thing that came out was my own realisation that I have traits myself, am in fact at least a half-aspie of some sort… But after that experience, I don’t feel able to pursue diagnosis for myself. We live in central Cornwall, it may be that services here are clumsy and of low quality, I wish we hadn’t found out the hard way! I love your articles and admire your frankness and clarity, it all helps :)

    • I was assessed as a female by someone who did not know enough about it I felt. I was told I did not have it because I was good socially. I am 69 and also because I had no parents alive (they died 20 years ago) to do that part of the assessment. So what do I do as I know I have it

      • So sorry for you Arta. I believe you and you can still work to understand yourself and use that information to have the best life possible. Become the expert you needed and help someone else by being there for them.

      • Arta I am 74 and seeking a diagnosis since my niece got diagnosed she and my sister both think I may be Aspie – I do too and have done the online tests which confirm it. I saw a psychologist who did a long interview and tests and 6 weeks later got a report saying I do not have autism. But I am not confident in this conclusion as I do not recognize myself in the report. You may well be good socially cos you have had a lifetime of experience in masking and in directing attention away from yourself in a social situation. That is how I survive. Maybe try and fins someone else.
        I will try and find someone else. .. she mostly sees older women with memory probs which I do not have. I am in the US and it is quite hard to find someone with experience with older adults, esp women.
        Maybe by now you found someone – good luck. We are never too old to find answers!

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